I was beyond privileged to participate in the Anishinabek G7
FASD conference last week in Sault Ste. Marie, Canada. The conference was hands down the most
positive experience I have had since starting my journey with FASD. There was no sleight of hand or Pollyanna-ish
glossing over the difficult realities that surround those affected by prenatal
alcohol exposure but there was a pervasive faith in the ability of all those
affected to rise above the challenges and a focus on what was needed to make
that possible I have never seen at any other event.
The shining stars of the event were those that live with
FASD every day. To RJ Formanek, James Gideon,
Savanna Pietrantionio, Tanya Northcott, Amy Shawanda, Julian Assinewai, Matt Sinclair,
Myles Himmelreich, and Daniel Cutknife, Thank you – thank you so much for being
willing to share your lives and experiences with all of us. Your stories moved me to tears – more than
once. In fact by the second day I had
given up on mascara entirely. Never
doubt the power of your words to make a difference in the world.
I participated in the conference as speaker as well as an
attendee and the sessions I led were new for me. When participating in events like this I
usually confine my topics to factual information – things like specifics about
FASD prevalence, primary and secondary
characteristics, the connection between brain function and behavioral symptoms,
and sensory issues. I use lots of power
point slides of brain images and research studies to make points. This time I chose to simply talk with the
participants, to ask them to engage with me in imagining a world where seeing, hearing
feeling things differently from one another didn’t make one of us right and the
other wrong but both of us just another facet of the human experience. I asked them to step outside the box with me,
and with all of our neuro diverse brethren and just be – without needing to delineate
the differences between us.
It was very scary for me.
First of all because I am hopelessly neuro typical and I LIKE my
box. I find it very cozy. Also because I am used to relying on my
slides and facts to keep me insulated from connecting with strangers. I am not comfortable in a large room of folks
I don’t know. So having a formal “role” with
the appropriate props helps me manage that.
I believe all humans have our own strategies we use to buffer us from the
parts of the world we are less comfortable with. Putting aside my buffer felt important when
I was talking about how we expect – even demand - that those who are neuro
diverse conform to the boxes that make us neuro typical types comfortable. We often describe people who are neuro diverse
(be it FASD or ASD or other forms) as rigid, inflexible in their thinking,
perseverative in their habits etc. which
makes it funny (sad funny not genuinely amusing) how rigid, inflexible and
insistent we neuro typicals are in trying to force those that think differently
into doing things the neuro typical way.
I try very, very hard to live outside my comfy box with my
son every day. Allowing him the “room”
he needs to thrive without constantly bruising himself against walls that I may
prefer – but do not NEED to be present in the same way he NEEDS them to be
gone. I fail often, imposing
expectations that are completely irrelevant simply because they are “usual”. Thankfully he continues to bloom in spite of
my bungling. For me the most important part of the
conference was the words of one of the attendees on the fetal alcohol spectrum
about my session:
“I really need to hear
your presentation again. Mesmerizing. I’ve never experienced that acceptance before.
Your words are words I need to hear over and over until one day I believe it!!!”
No matter how often I fail - I cannot ever stop trying to
speak and live acceptance every single day – because I want my son to know –
without doubt – with no need for convincing – how wonderful he is just as he
is. Thank you to the conference organizers and all of the participants for reminding me what is most important about this journey we are all on.
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